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Complex Kidney Cyst

Scared1126
Posts: 4
Joined: May 2018

Hi everyone,

I found out yesterday that the simple cyst on my right kidney is now complex.  I have had it for a few years. It did get bigger which is why the ultrasound tech recommended the CT Scan.  My doctor called and said I have to see a urologist because there is a 5 percent chance its cancer.  I know this seems like a small percent. She said the radiologist only recommended a 6 month followup. But I have high anxiety and I am imagining all these awful things.  I was wondering if this is similar to anyone else's story.  I don't know the size exactly but I knew it was rather large when it was considered a simple cyst and it's not currently effecting kidney function and my bloodwork is good.  I would appreciate any comments or support. Thank you in advance. 

icemantoo's picture
icemantoo
Posts: 3180
Joined: Jan 2010

Scarred,

 

We were all scarred in the begining,  Hopefully what you have is nothing, but lets find out now while it is close to 100% curable. That was me 16 years ago after a near certain diagnosis that it was Kidney Cancer. Let the Urologist give you his opinion on waiting 6 months, not the GP or Radiologist. Laets hope it is nothing, but if it is something deal with it and get it behind you.

 

The fact that your bllodwork is good and your Kidney function is good does not mean everything is OK. While they may indicate a problem if bad they can still be OK if there is a problem.

 

icemantoo

Scared1126
Posts: 4
Joined: May 2018

Thank you so much for your response.  I will see the urologist next week.  Your words really helped.  Just trying to be ok until then.  The unknown is so scary.  

I had the CT Scan done this week and results showed it was complex. I mean I don't even understand a 5 percent chance if its not biopsied. Confusing.

I love your story and your picture you both look so happy.

Hoping I can have a story to tell like you.   Any other info you can give me I would appreciate it.

 

Jennifer

icemantoo's picture
icemantoo
Posts: 3180
Joined: Jan 2010

Jennifer,

 

How big is the little bugger?

 

 

 

icemantoo

Scared1126
Posts: 4
Joined: May 2018

Dont have exact measurements. I am going to contact dr but I feel like they said it was large. Not sure what that means?

icemantoo's picture
icemantoo
Posts: 3180
Joined: Jan 2010

Jennifer,

 

 

Large and rescan in 6 months are not consistent. Complex cyst a 5% chance of Cancer are not consistent. Lets hope it is just a little buggar.     

icemantoo

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

I agree with Iceman: see a urologist. Better yet see a urologic oncologist. Your Primary care doc should be more than willing to provide a referal if you need it.

lobbyist0724's picture
lobbyist0724
Posts: 376
Joined: Sep 2016

Glad you found our site. I also have a cystic tumour and is Bosniak 3. I am from Canada and there's a medical paper at this link below. You might want to skim it through. Did they categorize your cyst into the Bosniak scale after the CT scan. From the fact that your cyst is just "becoming" more complex and doctor is say there is a 5 percent chance that it is cancerous. I think it might fall into the "Bosniak 2F" (F stands for follow up), but please confirm with your doctor. So please look it up from the guideline for more info. (It's important to remember that what you have is not a solid mass but a cystic mass, so hence the Bosniak rating system that guides what should be done.) Also, the true cystic lesions (excluding those pseudocyst from necrosis and etc.) are more indolent in general, so please don't worry too much but make sure you find a doctor that you can trust as others suggested.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5365391/

Scared1126
Posts: 4
Joined: May 2018

Wow!  Thank you for the amazing resources. I agree I feel confused by large and 5 percent chance. I just know it scared the hell out of me.  I go tomorrow for an MRI, so now I will have had the ultrasound, CT Scan and the MRI.  Going to take advice to find a urologic oncologist.  I am so happy I came here because the information from people who have been through this feeling of unknown. I dont think my GP really knows about it so she basically red me the CT scan report.  I am going to be as proactive as I can.  

Thank you and I will keep you posted,

Jen

Svenska1's picture
Svenska1
Posts: 3
Joined: May 2018

Over did it yesterday and this morning I am thinking that some sort of belly wrap to stabilize my tummy (could use a tummy tuck ! LOL) is in order.  Gravity is fighting me and wondered if any one out there has used any type of support band after surgery, and if so, what brand?  

Thanks for your responses.

icemantoo's picture
icemantoo
Posts: 3180
Joined: Jan 2010

Svensa,

 

Welcome to our club. I see you enjoyed the initistion. For your tummy tuck question, please start a new forum Post.

 

icemantoo

Svenska1's picture
Svenska1
Posts: 3
Joined: May 2018

Thank you, I will.  Rookie mistake.

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

Sorry you find yourself here.  Do you have a copy of the report, or can you get one?  Most facilities these days have an on-line system that you can look at the report directly.  Then you will see the measurements of this little beast.  Mine was a complex cyst and relatively small (about 3cm roughly).  When I got my first opinion, he looked at it and said it's 80-90% cancer.  I followed up with a 2nd opinion and they agreed it needed to come out.  Sure enough, it was cancer, but I was lucky, stage 1.  That was 5-1/2 years ago.  Still cancer free I'm happy to report. 

Waste no time getting your hands on the report and finding yourself a urologic-oncologist.  You need to be proactive and be your best advocate.

Best wishes, keep us posted.

Donna~

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